Hi, I have not posted on here for some time. I have now had bilateral ijv decompression in AZ and just had a follow up CT and surgery looks great but unfortunately still severe compression. So, recommendation is having a stent placed. I have had a referral placed to Dr Fargen for one year. But my provider is going to see what the status is at this point. Does anybody have any thoughts/experience with seeing him and his procedures. I still have concerns about stenting.
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From what we are learning, Dr. Middleton referred Dr. Fargen as a good surgeon. Since that referral, we also heard that Dr. Hepworth in Denver, CO also gives Dr. Fargen’s name as a good surgeon. Dr. Fargen is a neurosurgeon, while Dr. Hepworth is an ENT and works with the sinuses and skull base surgeries, including Eagle Syndrome and vascular compressions in the skull base area. Dr. Fargen writes on his website that patients who go the stenting route often need it redone again. Here are his own words about it: “Many patients, but not all (thankfully), have a honeymoon period after treatment, only to find themselves back in my office 6 months or a year later with recurrent headaches that impair quality of life…Patients must have the expectation that this condition (IIH) will be chronic…This fact makes being a patient challenging, but also makes treating patients with this condition particularly challenging for the specialist.” Would bouncing the idea off both Dr. Fargen & Dr. Hepworth be beneficial – if they both say stenting is necessary, then you can proceed more easily knowing two reputable doctors are saying the same thing? A second (or third, fourth or fifth) opinion usually never hurts more than your wallet!
Or maybe they’ll both say more decompression is necessary…?
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Thank you so much for your feedback i do have Dr Nakaji and my neurologist who is well informed with this condition. Saying next step is stent. But agree with you never hurts to get additional opinions.
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@birdie1 - How long has it been since you had your second surgery w/ Dr. Nakaji? Are both IJVs still severely compressed? There have been cases where compression remained for a number of months post op then gradually the IJVs opened. It’s hard to know what to do in cases such as yours i.e. wait a bit longer to see what happens or move forward w/ further treatment.
Dr. Costantino would be another doctor worth considering for a consult. Different doctors see different things that could be causing vascular compressions in scans and additional opinions can help those be revealed if there are other factors involved that can be treated w/o a stent.
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Bilateral severe compression. Left side 7 mos post op and right side 3 mos post op. I had a ct after left side and just had a repeat scan after right side. And no symptom relief, just discouraging
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I’m sorry that the decompression surgery hasn’t made any difference to your symptoms, that’s so rotten … We’ve not had many members who have returned for a stent (it may be that some have, but haven’t been back on here?), I’ve heard mixed things about stenting, but I guess all you can do is to be guided by the experienced doctors. There are some research papers which mention it, if you have time to look in the Research papers category, including by Dr Fargen, here’s some to get you started in case they’re helpful:
FARGEN; HUI et al. (2025) - Cerebral venous outflow revisited: Contemporary insights to simplify a complex disease - General / Research Papers - Living with Eagle
[b273438078a4c4b4c8254b88750bf552f62aa7b1.pdf]
(https://canada1.discourse-cdn.com/flex027/uploads/ben_eagle/original/2X/b/b273438078a4c4b4c8254b88750bf552f62aa7b1.pdf)
The Promise, Mystery, and Perils of Stenting for Symptomatic Internal Jugular Vein Stenosis: A Case Series - PubMed
FARGEN; HUI et al. (2023) - “Idiopathic” intracranial hypertension: An update from neurointerventional research for clinicians - General / Research Papers - Living with Eagle
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I agree! How discouraging. I’m very sorry that your surgeries haven’t produced better results. Dr. Fargen may be your best resource so I hope Dr. Nakaji will be able to get Dr. Fargen’s office to respond to you since you’ve already “done your time” in waiting to hear from them. A year without a response is a bit ridiculous.
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@birdie1 - Did Dr. Nakaji mention anything about ballooning your IJVs to see if that would help them open? It would be your best next step as we’ve had some members whose IJVs didn’t open but post op decompression ballooning did the trick & prevented the need for a stent.
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After initial surgery there was mention of ballooning, but he was unsure what the success would be. Unfortunately I am communicating with a front desk staff relaying information, and I have so many questions! So I have not heard any response back with the holiday last week. Im finding it very difficult having out of state providers and trying to get a plan of care while feeling miserable. I am sure many people on this site can relate with this feeling.
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Sadly it does seem to be the case that the few vascular ES doctors we know of are all so busy & so communication is really difficult, & often the offices don’t seem to be efficient!
Hope that you can get in touch with someone who can answer your questions soon!
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@birdie1 - You may have to make a telehealth appt w/ Dr. Nakaji to get your questions answered & to help move away from second-hand messages from the front desk.
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@birdie1 - What sort of compression is still happening, based on your imaging? Were the styloids completely removed? Did he do C1 shaving or any other decompression beyond removing the styloid?
Continuing the discussion from Stenting ijv:
styloidectomy and c1 tuberclectomy. Now he is recommending having another CT so I am going back to AZ to have that done. The previous study was done locally appears the one side is still compressed by bone and the other maybe by muscle. I have not talked directly to Dr Nakaji so I am unsure what he is really looking for on this new scan, but I hope some clear diagnosis on the next image
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@birdie1 - By all means discuss the study you had done locally w/ Dr. Nakaji re: possible remaining bone & muscle compressions. We’ve had other members who’ve seen more than one vES surgeon to get the best outcome. Often the surgeon who did the first surgery won’t do a revision surgery, but a second surgeon will. Dr. Costantino seems to be the “go to” for revision surgeries, but both Dr. Hepworth & Dr. Nakaji have done their fair share.
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Unfortunately I dont have a appt with Nakaji, only the CT scheduled in a couple weeks in AZ. But I hope to hear details, and not just staff relaying the information. What is the timeline getting into Costantino if I need another opinion?
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Costantino books out about like Nakaji does. He’s not in league w/ Cognetti or Hepworth, though I think someone recently mentioned their initial consult w/ Costantino is in Feb. Not positive about that so it would be worth calling his ofc to ask.
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